Una's Blog

by Una Hearne.

May is M.E. awareness month so I’m writing this to raise awareness of what it’s like to live with. Living with any chronic illness is different for each person – this is my personal story. Please note I am not looking for sympathy, I believe everyone has sh*t to deal with in life, this is just my sh*t. 🙂 And I’ll explain the picture at the end…

History

I have had M.E. since a bout of Glandular Fever (Mono) age 16, I’m now 55. Historically M.E. has been dismissed as a psychological issue. The lack of acknowledgement, or any kind of support from the medical profession and general public has given my entire adult life a nightmarish quality. Knowing something is very wrong but being consistently told ‘it’s all in your mind dear’ is mind-manglingly frustrating. My close friends have always believed and supported me, I wouldn’t be here without them.

While I was too ill to work in my 20s, I did recover enough (to 50% normal energy) to work through my 30s and 40s – sleeping most of the time I wasn’t working. In 2016 I relapsed badly and now have about 10-15% of the energy of my peers. The biggest loss for me is not being able to do the work I love.

Ironically it was that work which caused the relapse – I was a busy life and work coach and trainer. Because I loved it so much I pushed through the increasing exhaustion every day. Ignoring the signals from my body and even trying to build myself up with exercise. Now I know that exercising past my energy limits was further damaging an already broken system. It was inevitable I would crash and burn.

M.E. is like having a job I never applied for and didn’t want anyway. No, it’s worse, it’s 24/7 – no breaks, no weekends, no holidays and I feel ill all day, every day. Additionally the long, humiliating and very stressful process of applying for disability allowance was necessary since I can no longer earn a living.

My quality of life did improve in two ways since my relapse. The world has moved on, M.E. is becoming accepted for the physical illness it is and I now have a wonderful doctor and a consultant who has helped considerably with symptom control. Along with that I no longer have to hide how exhausted I am all the time and I don’t have to make excuses any more for all the events I can’t attend. That’s a huge relief.

How I live now

I have 2-3 good days a week. On those days I can do one big thing, like a client session (yes still clinging to coaching a couple of hours a week!) or the grocery shopping or occasionally socialise for a couple of hours.  Generally the day after a big activity I will have a bad day, I have about 2-3 of these a week also. On a bad day I’m pasted to the couch, weak as a kitten and can only manage eating and getting to the bathroom a few times – in pain and moving like a 90 year old. On my medium and good days I get my housework done in small amounts spread over the days.

The daily basics of living take most of my energy. However I claw back about 8 hours a week by being quite fantastically organised and by sacrificing some things (like a daily shower, how I miss that!). My 8 hours a week of disposable energy – if you will – has to cover all work, social life, such exercise as I am able for and hobbies. Quite restrictive, yes. Over the years I’ve learned how to maximise every scrap of energy and get the value for it by putting it into my highest priorities. And I choose – every day – to focus on what I can do and enjoy, and not on what I’ve lost.

Symptoms

M.E. affects every system in the body so the range of symptoms is quite impressive. Let me deal with the word ‘Fatigue’ first. You know the feeling when you have had a long, stressful week and you flop on the couch Friday evening – drained, exhausted, with nothing left to give? Now imagine that is the state in which you start every morning. And that is as good as it gets. Would you call that fatigue?

A better description in M.E. is that it’s an energy problem. It’s like we have a battery that will only charge to 10 or 15%. No matter how much good sleep we get. If we go over our energy limit we will ‘crash’ and it can take days/weeks/months to recover. This crash is called Post Exertional Neural Exhaustion (PENE) and all of our symptoms will worsen. The more I’ve overdone it, the longer the recovery and the worse the symptoms. Especially pain.

Next is orthostatic intolerance -I need to be lying down for 20 hours a day. Yes that is only an average of four hours for all upright activities including sitting. If I stand for more than about 5 minutes I get pain and this increases rapidly the longer I stay standing. Walking and sitting are easier. However the pain will catch up from walking and hit me later.

There is also the sleep disturbance. Please do not email me and say sleep hygiene – I will throw things. It is common in M.E. to become ‘reverse diurnal’ so the only guarantee of good sleep I have now is between 4am and noon. Consequently I live in this strange twilight zone with no mornings. I also have a jumpy leg and for years this stopped me falling asleep or woke me up just after I fell asleep. This is now controlled by a miracle drug – so grateful for that.

Amongst the other delightful symptoms I experience are: the mortifying excessive sweating (should not happen to a girl); brain fog (I have a good brain, but frequently no access to it, can’t describe how embarrassing and frustrating); frequent headaches and migraines; memory issues; frequent flu-like symptoms; visual sensitivity and disturbance; balance issues; digestive issues… ye gods I’m bored writing them – you must be asleep! I won’t go on, but I will tell you my greatest fear is losing my independence, 25% of people with M.E. are mostly bedbound and require carers. Can’t even go there.

And now the picture at the top – a moment of levity – honestly you have to take the laughs where you can find them! The most bizarre symptom of all, I’ve only just learned about this one – we can lose our fingerprints. When I read that, for one glorious moment I saw myself in my new career as an international jewel thief (I look like Audrey Hepburn in it). The glamour, the excitement! The sports cars! The beautiful young men! ……

Of course there is no point in breaking and entering if you immediately need a 12 hour nap and you’ve forgotten what you broke in for. Well, nice while it lasted. 😀 It does explain why the fingerprint recognition on my phone won’t work though!

Please remember

When I’m out in public or on zoom I look normal. You would never guess there was anything wrong with me. There are millions of us out there looking normal while dealing with mental or physical illness, or terrible situations. Be kind to everyone, you never know what they are dealing with.

Una x

PS: Please, I beg you, do not email me with suggestions – trust me I have heard about and tried them all – I’m already doing the things that work for me. Thank you for reading.

 

 

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